Around the world are different traditions during New Year's Eve and day. In the U.S., many like to watch the ball drop in New York, be it in person or watching on TV. According to Google, Australians often take boat cruises and also watch countdowns in cities. Some people have certain activities they always do while others just party the night away.
My family often has a small party on New Year's Eve. We used to all stay up until midnight and watch the clock change, but we haven't in a few years now. Living with those in the sixth decade of life means we're usually wrapping up around 10:00, but I must admit that I'm not much for staying up late either.
This year, I did not have a night nurse on the eve of 2018. Therefore, my mom and I were up at midnight to watch the clock switch, but we both would have rather been near sleep. I did have a tradition I followed for a few years, and one that was unique to the quad life.
When I used the traditional ventilator, I liked occasionally getting off it for a few minutes at a time and practice my breathing. It was a nice break from the noise and the mechanical breathing pattern of one breath every four seconds, or 15 breaths per minute. Every other week my tracheostomy (trach) tube was also changed. I have full feeling of the area around my trach and my throat, so it also felt good to be free of it for a short time.
I made it a tradition that we did my trach change when the year renewed. My nurse would remove the tube just before the stroke of midnight and replace it after the hour change. I could therefore say I ended the year without having the hardware and started the year without it as well. Granted, it was less than a minute most years, but it was still a unique way to start the year.
In 2015 I replaced my full tracheostomy with a trach button. Also with different caregivers, I wasn't changing it at night anymore. Therefore, like many traditions, it is now just a memory.
With the first week of 2018 now complete, I have already started new routines of biking multiple times a week and continue daily reading. I will see what God has planned for the upcoming weeks and months.
Showing posts with label ventilator assistance. Show all posts
Showing posts with label ventilator assistance. Show all posts
Sunday, January 7, 2018
Tuesday, July 19, 2016
Upgrade or Downgrade?
When I received my spinal cord injury in 1985, portable ventilators were not very common. Fortunately, two options existed at the time and my parents chose a model called the PLV-100 by
Respironics. It ran quieter than the other type and seemed to work well.
For the next couple decades, this is what I used to get every breathe. I had one vent on my chair and another by my bed equipped with a humidifier. In college, my original machines were replaced with new ones of the same model and the same company, completely covered by insurance.
When I received my diaphragm pacemaker in late 2010, I continued to use my green box while I transitioned to the new system and kept them available for backup. They remained close by at all times, until last month.
With the beginning of the year, my insurance decided it would be like Medicaid and start renting vents instead of paying for them. Even though my machines were purchased around 2002, my equipment provider started receiving rental checks for both machines every month. This increased monthly maintenance fees by a factor of 12 and meant I had to update to newer models, even if I
didn't want to change.
Therefore, I have now have two new vents still by Respironics, but this time a Trilogy. The large green machines are now smaller and blue, but also much noisier when operating. In talking with my respiratory therapist that does regular maintenance checks, the new machines are also not as reliable as the old.
Fortunately, it has been a few years since I have used a traditional vent for any length of time. If I did have to go back on it, this system should also be able to go on the back of my chair if needed. I wouldn't be able to make people hear me, but I would be breathing at least.
Some days in the quad life make me wonder if people who make these machines actually know someone who uses them or just looks at statistics and cost. In any case, I'm thankful that this technology exists and has worked well for so many years. I was told that some of the old vents are being taken for use in third world countries, so they will get used by people that need them. We'll see what another week will bring.
For the next couple decades, this is what I used to get every breathe. I had one vent on my chair and another by my bed equipped with a humidifier. In college, my original machines were replaced with new ones of the same model and the same company, completely covered by insurance.
When I received my diaphragm pacemaker in late 2010, I continued to use my green box while I transitioned to the new system and kept them available for backup. They remained close by at all times, until last month.
With the beginning of the year, my insurance decided it would be like Medicaid and start renting vents instead of paying for them. Even though my machines were purchased around 2002, my equipment provider started receiving rental checks for both machines every month. This increased monthly maintenance fees by a factor of 12 and meant I had to update to newer models, even if I
 |
| New vent alongside suction machine |
Therefore, I have now have two new vents still by Respironics, but this time a Trilogy. The large green machines are now smaller and blue, but also much noisier when operating. In talking with my respiratory therapist that does regular maintenance checks, the new machines are also not as reliable as the old.
Fortunately, it has been a few years since I have used a traditional vent for any length of time. If I did have to go back on it, this system should also be able to go on the back of my chair if needed. I wouldn't be able to make people hear me, but I would be breathing at least.
Some days in the quad life make me wonder if people who make these machines actually know someone who uses them or just looks at statistics and cost. In any case, I'm thankful that this technology exists and has worked well for so many years. I was told that some of the old vents are being taken for use in third world countries, so they will get used by people that need them. We'll see what another week will bring.
Monday, April 28, 2014
Yes, but No, or Maybe
Do you ever feel like you go forward one step, or wheel length, just to go backward further? I think we all do at some point, but some days more than others. Unfortunately, that's still the case with the insurance issues.
Last week, my doctor had a conference call with another doctor and a couple nurses at my insurance company. They agreed I need to have care in order to prevent, and take care of, pressure sores and other needs. However, since I am not on the ventilator, just the diaphragm pacemaker, it doesn't need to be skilled care. However, that kind of care is considered comfort care, which isn't covered by my, or apparently any, plan.
The nursing home I'm planning to go to if nothing else works out also doesn't know if they can take me. I gave them my care needs, which I have in detail in a 30 page book, a few weeks ago. Now, they're unsure if they can take me with their other vent patients as I could be too much work for them. My caregivers laugh at that, but at least it shows they are making sure everyone gets adequate care. However, that means I may have to look at a facility much farther away from home, with just over a week to go.
At this point, all I have is that I do indeed need care, but can't find a way to get it. We are told in Matthew 6 to not worry about tomorrow, for today has enough worries of its own. That is definitely true, but increasingly difficult to remember. With trying to make sure to get ample time off my pressure sores, it's hard to get work done. When that work includes trying to stay at home, prioritizing is a real challenge.
It seems the main issue I keep running into is that the Diaphragmatic Pacemaker System (DPS) isn't understood. Yes, it allows me to be off the ventilator, but I'm still not breathing on my own. If my arm hits the wires just right, I'm not breathing unless it can be fixed or I'm put back on the vent. In the three years I've been using the DPS, that has happened several times. Therefore, I need caregivers skilled in the DPS and ventilator use. I still also need suctioned regularly, more than when I was on the vent, and continued chest treatment. No, the DPS doesn't have tubes that become disconnected, but it still has its own trouble.
By the next post, I need to have a solution, but unfortunately I won't be holding my breath. In order to do that, I would need the DPS turned off!
Last week, my doctor had a conference call with another doctor and a couple nurses at my insurance company. They agreed I need to have care in order to prevent, and take care of, pressure sores and other needs. However, since I am not on the ventilator, just the diaphragm pacemaker, it doesn't need to be skilled care. However, that kind of care is considered comfort care, which isn't covered by my, or apparently any, plan.
The nursing home I'm planning to go to if nothing else works out also doesn't know if they can take me. I gave them my care needs, which I have in detail in a 30 page book, a few weeks ago. Now, they're unsure if they can take me with their other vent patients as I could be too much work for them. My caregivers laugh at that, but at least it shows they are making sure everyone gets adequate care. However, that means I may have to look at a facility much farther away from home, with just over a week to go.
At this point, all I have is that I do indeed need care, but can't find a way to get it. We are told in Matthew 6 to not worry about tomorrow, for today has enough worries of its own. That is definitely true, but increasingly difficult to remember. With trying to make sure to get ample time off my pressure sores, it's hard to get work done. When that work includes trying to stay at home, prioritizing is a real challenge.
It seems the main issue I keep running into is that the Diaphragmatic Pacemaker System (DPS) isn't understood. Yes, it allows me to be off the ventilator, but I'm still not breathing on my own. If my arm hits the wires just right, I'm not breathing unless it can be fixed or I'm put back on the vent. In the three years I've been using the DPS, that has happened several times. Therefore, I need caregivers skilled in the DPS and ventilator use. I still also need suctioned regularly, more than when I was on the vent, and continued chest treatment. No, the DPS doesn't have tubes that become disconnected, but it still has its own trouble.
By the next post, I need to have a solution, but unfortunately I won't be holding my breath. In order to do that, I would need the DPS turned off!
Saturday, December 18, 2010
Technology
As a vent dependent quadriplegic, I rely on technology for every breath I get. Whether it is from a ventilator, or my new diaphragm pacing system, technology is involved in some form. As a web developer, I also use technology for work, it's also required for people to view my work.
Last week, my computer started acting up, freezing unexpectedly due to screen problems. As any geek would, I attempted to isolate the problems and work so as not to have them occur. Unfortunately, this only worked for a few days, and Wednesday night, while having supper, the computer froze while simply running the screensaver. Attempting to restart it on Thursday was not successful either.
Therefore, a trip to the Apple store was needed to start the fixing process. Thankfully, one of my assistants was going there today with her family and was willing to drop it off. In the mean time, while my primary computer is is the shop, I'm using my backup computer, about a five-year-old laptop.
I'm thankful that I have been able to get these resources, and that I was given information about an online backup service that has allowed me to continue working. Getting used to this computer's quirks and older technology has taken some adjusting, but I'm grateful to have the option.
As for the other pieces of technology I depend on, thankfully God has provided engineers that make them very reliable. No engineer can fully duplicate God's design of the human body, but for those of us that need alternatives, He has provided a way.
Last week, my computer started acting up, freezing unexpectedly due to screen problems. As any geek would, I attempted to isolate the problems and work so as not to have them occur. Unfortunately, this only worked for a few days, and Wednesday night, while having supper, the computer froze while simply running the screensaver. Attempting to restart it on Thursday was not successful either.
Therefore, a trip to the Apple store was needed to start the fixing process. Thankfully, one of my assistants was going there today with her family and was willing to drop it off. In the mean time, while my primary computer is is the shop, I'm using my backup computer, about a five-year-old laptop.
I'm thankful that I have been able to get these resources, and that I was given information about an online backup service that has allowed me to continue working. Getting used to this computer's quirks and older technology has taken some adjusting, but I'm grateful to have the option.
As for the other pieces of technology I depend on, thankfully God has provided engineers that make them very reliable. No engineer can fully duplicate God's design of the human body, but for those of us that need alternatives, He has provided a way.
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